Slapped by Stigma

Have you ever been slapped in the face by someone’s prejudiced thinking about mental health needs? That’s called stigma. It first happened to me when my son was seven.

My son spent a lot of his 7th birthday party lying on the floor at Chuck E Cheese crying and saying, “I don’t deserve to live – I want to die.” Like his friends, he would race excitedly from game to game, then run back to me to say, “Guess what I won?” Then his mood would plummet and I’d see him drop to the floor, disconsolate. His friends would stop next to him and try to cheer him. Not long after, he had his first inpatient stay.

A year before, we had moved into a newly built housing tract. The school district was good, the neighborhoods were designed with curving streets and cul-de-sacs, which made them perfect for families with young children who rode their bikes and skateboards. All the houses around us seemed to be filled with kids the same ages as my two sons and they were soon traveling as a posse to one another’s houses to play with this game or try out that swing set. Families invited each other to parties and outdoor barbeques.

After my son’s hospitalization (which lasted nearly a month) he insisted on going to each of his friends’ houses to let them know he was home and available to play. I asked him what he was going to say. “They told me at the hospital that lots of kids go to the hospital to have an operation or because they are sick,” he said. “It’s just like that, except it’s your feelings. It’s okay to talk about it.” I felt that little clutch in my stomach that mothers get when they worry. But what did I know? This was a new world for us and if the “experts” told my son it was okay to talk about his hospitalization, then I was going to defer to them.

He set out on his neighborhood journey, going from house to house while I stood a little distance behind him. He did great, shaky a few times but was met with smiles and nods for the most part.

Not long after we got back home, I got a call from Denise’s mother. Denise was doted on by her parents and had been born some years after her older brother. They lived cater corner across from us and she played often with my son. Denise was perfectly dressed, her blonde hair done up in dozens of new ways each week. Denise’s mother was not all smiles and nods on the phone. She told me that although she felt sorry for my son, Denise was not allowed to ever play with him again. If he came to the door, he would be turned away. If he called, the phone would be hung up. If he was playing in their neighborhood group, Denise would not be allowed to join in. In fact, she added, she would appreciate it if I told him when he walked in front of their house to please use the sidewalk on the other side of the street. The rejection couldn’t have been more complete.

I told my son a gentler, highly-edited version of the conversation and it’s something he doesn’t remember today. But I do. My judgemental neighbor went from embracing we-are-all-raising-our-kids-together to making it very clear that there were two groups now, “us” and “them.”

Many people believe that there is less stigma today around mental illness, treatment and even psychiatric medications. They point to the growing number of stories that people like me tell of their own experiences, or that people with their own lived experiences relate. These stories don’t just provide a name and face, but details about what works and how it feels to experience the slings and arrows of a very tough mental health system. But an experience with in-your-face stigma changes you. You lose patience with slow change. You can’t go back to thinking that it’s lack of education or inherited attitudes. It’s more than that. Stigma is an ugly thing.

Researchers say stigma is a term “which has evaded a clear, operational definition.” It actually has three parts: lack of knowledge (ignorance), negative attitudes (prejudice) and excluding behaviors (discrimination). Like many others, my son and I have experienced all three.

Stigma is not just carelessly using words like crazy or psycho. It’s shunning like my son and my family experienced. One mom told me recently that her child was ostracized by her ex-husband’s entire family, who wished to hide her son’s mental health needs. It’s seeing your child shunted to the psych evaluation room from the emergency room as soon as they hear the mental health diagnosis. Another mom recently wrote, that even though her daughter overdosed on pills and was violently ill in the emergency room, “they stuck her in a psych room with a security guard” because they “thought she was faking it.” It’s being denied opportunities like the parent who told me she had to choose between a therapeutic school with a stripped down curriculum, or an academically challenging one with no therapeutic supports for her brilliant, beautiful daughter with extreme mood swings.

The hurt caused by an experience with stigma stays with you for a long time. You feel a little more mistrustful, a little more righteous anger and have warring impulses between disbelief and cynicism. I’m hurt, you feel; this is unjust, you think; this must stop, you realize. We need to keep telling those stories, we need to keep waging our awareness campaigns but we need something more. We need warriors.

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Lisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL) and a Children’s Mental Health Network Advisory Council member. Lisa Lambert became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. Her areas of expertise include mental health policy, systems advocacy and family-driven research.